ReSPECT – a new approach to advance care planning

It is a truth (almost) universally acknowledged that DNACPR/DNR notices are not working. Cases such as Tracey and Winspear show that the conversations that need to take place before decisions are taken to place such notices in medical records are not happening. Cases such as that of Andrew Waters show that determinations as to when CPR may be appropriate are – at least in some cases – made on the basis of unjustified assumptions as to disability.

To mind, just as important – if not more importantly – questions as to when CPR should be attempted have assumed a prominence which arguably detracts from the bigger picture. A fixation on one specific intervention (which may, in many cases, not work) has led to a loss of focus upon the wider issue of the overall priorities for the individual patient in circumstances where they may not be able to give specific consent. Importantly, those priorities are just about what sort of care the patient may want as well as specific interventions they may not want. Identifying these priorities are just as important for patients who lack the capacity to participate in such discussions as they are for those with it.

It is for this reason that the ReSPECT process that has recently been unveiled for use by clinical bodies is so welcome. Short for “Recommended Summary Plan for Emergency Care and Treatment,” the process is designed to lead to the completion of a form setting out recommendations for clinical care in emergency situations where obtaining the necessary consent will not be possible. Importantly, the process, and the form, starts not from the identification of specific interventions, but rather the personal preferences of the individual, to outline whether their priority is to sustain life or prioritise comfort. Against that spectrum, it is possible then to develop the requisite recommendations for care and treatment and (where necessary) outline specific interventions that may or may not be wanted or be clinically appropriate.

The process, and the form, is the subject of ongoing research as it is implemented in different localities across the United Kingdom, but for my part it is a vital first step in enabling a culture change to ensure that emergency care and treatment is properly personalised.

I would just add a few specific comments about how I see the process working in relation to those with impaired capacity from the perspective of the law of England and Wales, amplifying the observations made in the BMJ article by Dr Pitcher and three of his colleagues (an article to which I should perhaps note I did not contribute).

It is crucially important to understand that the completion of a ReSPECT form is not the same as the creation of an advance decision to refuse treatment (although one would hope that the conversation would prompt consideration of whether one should be completed and/or consideration of whether to appoint a health & welfare LPA). It is, rather, the making of a set of recommendations as to what treatment it is likely to be appropriate to provide (or not provide) in the event of an emergency. As recommendations they are not binding upon those who may be charged with making the decision in that situation as to whether or not treatment should be offered/continued.

However, as was recognised in both Tracey and Winspear, because of the likelihood that those recommendations will be followed, Article 8 ECHR imposes procedural obligations upon those drawing up those recommendations properly to involve the patient and/or those interested in their welfare. This is so simply by virtue of the fact that recommendations are being made – whether or not they are, in fact, acted upon in due course (in neither Tracey nor Winspear was there any connection between the fact of a DNACPR decision having been taken and the fact of the individual’s death). Winspear has made clear that the courts consider that Article 8 ECHR procedural protections in this context are to be read through the prism of the MCA 2005, and hence that the individual must therefore have either capacity to participate in the process of the making of those recommendations or, if they lack capacity, to have their interests secured either (1) by the way of an informal best interests process – including, importantly, consultation with those interested in their welfare; or (2) (logically) the formal involvement of a proxy: an attorney or a deputy.

Where recommendations have been developed following the process set out above then: (1) the individual’s rights under Article 8 ECHR will have been secured; and (2) any clinician called to act in an emergency situation and following them can do so confident that their actions are in the individual’s best interests (and hence that they are ‘covered’ by s.5 MCA 2005).

In the context of determinations reached without the involvement of a proxy decision-maker, then, as the recommendations are those of the senior clinician involved, it will be the senior clinician’s view as to what recommendations best serves the patient’s interests (informed, of course, by both the principles set out in s.1 MCA 2005 and consideration of the factors set out in under s.4) which will form the basis of those recommendations made in the record.

It is, however, perhaps worth adding a word about the role of proxy decision-makers in this context.[1] In the development of the recommendations, the views of a proxy decision-maker as to what are in the patient’s best interests should, in general, be taken as determinative on this point. The proxy decision-maker would, in other words, stand in the shoes of the patient as regards the formulation of the recommendations. However, there is an exception to this if it is sufficiently clear that that the views that the proxy decision-maker are advancing are not in the best interests of the patient. There is an argument that a decision that a proxy seeks to make which is starkly contrary to any reasonable formulation of the best interests of the patient cannot be said to be a relevant decision for purposes of s.6(6).[2] If so, it would be possible not to take these account in relation to the formulation of the recommendations, especially if the proxy decision-maker has persisted in advancing such views after discussion (including, for instance, involvement of a second opinion). However, I, for one, would expect in such a case that there would be recourse to the Court of Protection so as to ensure that there could be no doubt that any clinician who might in due course either administer or withhold treatment could rely upon the s.5 MCA 2005 defence. I would, though, very much hope that a central outcome of the ReSPECT process being embedded is that such disputes will be vanishingly rare as better conversations take place at an earlier stage.

[Full disclosure, I have been involved in giving informal legal input to the ReSPECT working group].

[1] I should note that the position in this regard in England and Wales is not identical to that in Scotland, where a somewhat different approach to the place of proxy decision-makers can be found in s.50 of the Adults with Incapacity (Scotland) Act. The BMJ article I noted above, by referring to “UK” in the context of the place of proxy decision-makers seeks to address both positions in a statement which needs perhaps qualifying by reference to the legal frameworks in place in both jurisdictions.

[2] Section 6(6) provides that reliance cannot be placed on s.5 MCA 2005 to act contrary to a decision of a proxy decision-maker. However, this only applies to decisions that are taken both within the scope of the proxy decision-maker’s authority and “in accordance with [Part 1 of the MCA 2005],” i.e. in accordance, amongst other things, with the principles contained in s.1.

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One Reply to “ReSPECT – a new approach to advance care planning”

I’m not convinced that Tracey or Winspear have been effective in securing a dying patient’s human rights. The need to discuss with relatives before putting a DNACPR notice on a patient who would not survive CPR seems to be creating an Article 8 right for relatives at the expense of the Article 3 rights of the patient. Causing distress for no purpose other than to follow procedure seems morally wrong to most clinicians. Who gains from the procedural niceties if return of circulation following CPR is almost impossible and so will not be delivered irrespective of the relatives wishes? The incapacitated patient has nothing to gain at all. Post 2016 I find that the need to follow procedure and keep relatives ‘in the loop’ is causing needless suffering to those at the end of their lives. If avoiding breaking the ribs of 90% of those over 70 years old with no prospect of them regaining consciousness is unlawful without discussion with relatives then I think a schism has developed between law and ethics. ‘Practical and appropriate’ require better explanation. Both Dyson MR and Blake J were warned that their judgments might have undesired consequences but both went on to opine the same anyway. Best interests – absolutely behind the judgments; physiological futility (in the most proximal ‘Lady Hale’ sense) – I think the judgments do not stand up to scrutiny.

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— See Court of Protection User Group for information about the group. Contact Tolu Somade, Business Support Officer to HHJ Hilder (tolulope.somade@Justice.gov.uk) to confirm attendance at the meeting. Time: 2pm. Note change of date (previously was 23/4/19)

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